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Endometriosis UK
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Diagnosed with endometriosis today...

After having some pelvic pain and suffering from general achy ness (if there is such a word, lol). I have several large cysts, one on the right 84mm in diameter, and another of the left 60mm in diameter. I've now being referred to another specialist to look at the rectum as my Fallopian tube has some how connected to my bowel, the specialist thinks it may be from scar tissue. As this is all new to me, I was wondering what sources people have used for information, can u recommend any books, including managing it as best we can with a diet please? Having had a look on the internet this evening I'm finding it all rather overwhelming:-(

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I've done researched on Internet. It's a lot to learn:(

I hate having endo,

I wish you good luck.

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Thank you for your reply. I think I've done enough reading for tonight, I'll tackle it again tomorrow I think. Give myself a bit of time to digest it all !

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If you need any answers just please message me I will try to help if I can :)

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Thank you, I appreciate it :-)

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Hello.

I was sorry to read about the diagnosis you had today. I've had endometriosis for 20+ years. I have called it my friendly allien. One that causes me pain, makes me sad sometimes but also it's part of who I am. It's not a glamorous disease as it impacts on every part of our life. (Sex, fertility, work, social life etc)

My advice is for you to get a book called ENDOMETRIOSIS FOR DUMMIES. This is a very informative book but is written in a way that Is understandable but not patronising.

I wish you my very best wishes and am sending you massive cyber hugs.

Barbara (and the friendly allien ! ! )

P.S I have tried all the different types of pain medications but the best relief I get is from hot water bottles and heat pads. X

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I had an mri scan last week, today I saw my consultant do go through the finding. He had a report with him, which I did get a copy of, which helps. On the right side it appears to be in my tube, on the left side the largest is on it's on my ovary, the report does says there are a few on the left but only details the largest.

The list of questions sounds good,(thank you) it will help me get a better understanding before I go in there. I didn't say much today really, as I didn't know what to say!

He said I'll need to see another consultant now, whom may want to have a closer look at the back passage (with a camera :-( ) and I would them either have key hole, or a operation to have them removed but would do this when the other consultant would be available in case he needed a hand.. I'm guessing that means with regards to my Fallopian tube being attached to something it shouldn't be.

Thank you for the links, and book recommendations, I guess my day at work tomorrow will be spent mostly looking at YouTube and amazon!!

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Hi Yellow Rose, many thanks for your thoughts/comments, thats reassuring to know :-).

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Hi

Just to echo what Barb has said - there are lots of books out there that will give you all the facts and figures you need but for a 'first timer', Endometriosis For Dummies is BRILLIANT. It explains everything in simple, friendly terms without being patronising. The only possible negative is that it's American so the links it gives aren't always useful or applicable in the UK, but the disease is obviously still the same.

The other thing I wanted to say - I know at the moment your head must be whirling, and it's all really scary and you probably want to run a mile from everything they're talking about doing. But it sounds to me as if you've got a fantastic team who are going to get on top of this for you. I'm not going to lie and pretend it's all going to be a bed of roses - once you've been diagnosed with endometriosis, that's it for life - but it's not necessarily a life sentence. Everybody is different, but once you've learned about how your endo is affecting you, and once you and the doctors have sorted out the best way of dealing with it for you, you might find that you're never bothered by it again. Or at least be able to live a normal life for most of the time. It's not like, say, diabetes which needs to be constantly monitored; if endo is being good then most of the time it's best to leave it entirely alone.

And one other thing - don't read too much on the internet. Boards like this one are invaluable for balance, but that's one thing that's sorely lacking more widely - people will always take to the internet in negative situations but the person who gets things sorted with no worries is not likely to report it so it will appear that the horror stories that pack the world wide web must be the norm.

I know you must be feeling like this is the end of the world at the moment. But it's really not. And on the days when it is (does that make sense? LOL!) we're all here going through it with you

Huge love and hugs

C xxx

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The book is on order (thank you). And thank you for your words, today i;ve just tried to take it all and think that its not the end of the world, i can manage it as best as can with the help and support of the people around me.

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I'm not suggesting that you can't have a good old rant to the world whenever you feel like it. I've had a big blub this morning after a scan yesterday showed up a cyst; after 21 years of this crap I know it'll sort itself out but right now I'm in the "IT'S NOT FAIR WHY ME" stage. Blubbing, kicking things, and eating chocolate :D

I know you've already had offers, but feel free to message me if you want to chat. Or rant :)

C xxx

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Oh bless you, I assume this means an op to have it removed?

One thing I am learning is that it's ok to get fed up, run down and just generally very peeved off with it all. It's what makes us stronger after all.

I just can't wait to have mine removed if I'm honest, I'm not sure follows after that other than messing around with different hormone treatments to try and keep it at bay.

And the same back to you, if I want to rant, let me know....x

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No, I can't have any more ops and plus it's much smaller than yours so we're zapping it with Zoladex. Not the end of the world but not the best way I can think of to spend the next 6 months!

You kind of have to keep an open mind with endo because it won't conform to any rules. Just when you think it's settled, it'll roar. Or when you're expecting it to roar, it'll stay quiet for years. Once you've had yours dealt with, you may well find that you don't have to worry about it again for ages; after I had my left ovary out I had a 10 year spell of 'just' pain when previously I had been having surgeries and/or drug treatments every 18 months.

Another good thing to maintain through endometriosis is a good sense of humour ;)

C xxx

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